Saturday, 24 December 2011

Oh what a beautiful face I must have right now. Currently trying out the Rudolph look with my bright red nose, due to constant blowing my brains out, and my eyes are nice and sunken in my head due to lack of sleep. To top it off I have received a fabulous Christmas present, one I’ve never ever had before... a delightful viral infection in the form of a shiny cold sore on my lip. Get me... I am on fire this Christmas.

The cold sore is getting me down, but that’s the reason it appeared most likely in the first place I am told. You can get them when run down, or it could be connected to the huge and overwhelming cold I have had this week. I can honestly say I haven’t felt this rough in a long time. I thought I might escape the dreaded cold virus this year as I have done pretty well in preparation (eating well, wrapping up warm etc) but I suppose having treatment that wipes out your immune system can really leave you open to anything. The cold has inevitably caused a bit of a flare up, but it’s manageable (with plenty of pain relief as always) so it’s not all bad.

I suppose the sacrifices I make to further my business, by standing out in the cold on a market stall for 12 hours with crippling arthritis can only lead to consequences. I decided to do the Christmas markets, with the help of my amazing sister by my side, to try and make a bit of extra money for the festive period and also to get in a festive mood I suppose. I forgot how hard working a full day is, I mean it’s not like I do it all the time. It really took it out of me, I am left exhausted and full of cold and with a nice addition to my face which means Christmas kisses are out of the question for me. Was it worth it though? Well in some ways yes, because it’s nice to get out and working, talking to people and of course promoting the business. But in other ways no, I unfortunately didn’t make my first million from a market stall (obvious really) so the long day and all the prep that went into it didn’t pay off as such in cash form. But I did enjoy spending time with my sister, being amongst the festive cheer of the public doped up on mulled wine and mince pies and it was almost like I had work colleagues again in the form of the other traders.

I know I am still experimenting with my capabilities and the limits of my condition. Sometimes I am not sure how far to push myself and its only clear I’ve gone too far the next day when I am all bent out of shape in pain. But we live and learn and I am definitely still learning. I think pain is much more manageable when it is for a reason. Before, when I was pretty much bed bound, I got so frustrated with the level of pain even though I wasn’t doing anything! So the fact I have achieved something before pain follows is so much better.

This Christmas I will be in recovery mode, making the most out of the family sofa, plentiful food and company. I will be dodging the cameras of friends and family best I can (I don’t wish to remember the addition to my face this Christmas... close ups are not an option thank you).

It’s Christmas Eve and I am definitely feeling joyful and thankful for everything I have, apart from the cold sore. I wish all my readers a very, very, merry Christmas and I hope it is pain (and cold sore) free for all of you even for a day so you can enjoy the time with your loved ones. I will be thinking of you all and hope that Santa brings you everything you dreamt of.

Wednesday, 21 December 2011

I received some very sad and shocking news late last week. An old friend and work colleague of mine sadly passed away after battling with breast cancer. She was so very young and left behind a beautiful 14 year old daughter. I struggle to make sense of the world when something like this happens. It reminds me just how short and precious life is and how it can end at any moment for any one of us. At this awful time, right before Christmas when everyone is celebrating, I can’t imagine what her poor family must be going through. When I needed a friend most after my mum was diagnosed with breast cancer herself, it was Lisa who was there for me. She listened to my worries and fears as we worked together and was often a shoulder to cry on. So how unfortunate that just 5 years later she should suffer the same fate and not win her battle as my mum did. I will never forget her kindness and strength, she was one of the loveliest people I have ever known and I write this in tribute to her and her family. I admit we haven’t had much contact since I left my job where she worked, but only recently when I found out about her illness I contacted her and expressed my deepest sympathy and get well wishes. At that time she was doing well, and I thought she would recover and what makes me even more sad is that she expressed her sadness at hearing I have been unwell too. I do wish that I had told her then how much I admired her and what a kind person she was to me, but I never thought for a minute Lisa wouldn’t be around anymore.

I know it’s a sombre subject but this weekend I have really been focussing on what I want out of life because who knows what is around the corner. We always take things for granted and just assume we will pass on old and grey years and years from now but as the story of my friend shows, we must appreciate life now and make the most of time with our loved ones. That is what I will be doing this Christmas, Appreciating how lucky I am to be around my family and friends. They mean the world to me and I intend to make sure they know it. I know we forget to appreciate things sometimes when we are feeling low and in pain but if you can, just remember life is far too short. I don’t mean you should rush your life and do everything right now, that would be silly, but I am now thinking about what the next few years can bring at least and what I want to achieve. I want to make sure I leave this world having all my boxes ticked (so to speak). Having children is next on the agenda and building a life for my family (except buying a house with no money may prove difficult). Anyways let’s leave on a happy note....

I wish all my readers the most wonderful Christmas. Enjoy every second of it and try to put aside your pain, even for a day, for your sake and the sake of your loved ones (who I am sure will hate to see you suffer this time of year). Remember those less fortunate than you and appreciate every smile, laugh and word shared between you and your family this year. Remember how lucky we are to have even one good day and enjoy all the good things that come with it.

Dear Lisa, rest in peace beautiful angel. Lots of love and support to your family. I will always remember you.

Monday, 12 December 2011

Christmas is nearly upon us again and I can’t help feel how fast this year has gone. If you had told me at the beginning of 2011 that this year would bring the launch of my own business, a total hip replacement and moving home amongst other things I think I may have laughed at you. It seems strange that so much can happen in 12 months and it’s easy to see from this alone how much can change. This time last year I was contemplating returning to work and beginning to look for jobs that would suit my condition, which never actually worked out hence the business launch.

The past couple of weeks have been hard, though, with the biggest of flare ups in a while. I am still suffering but powering through. I am still not quite sure what the situation is with my other hip, some days it’s awful and others not so bad so maybe it hasn’t quite deteriorated as much as I thought, but I will be keeping an eye on it.

The arrival of Christmas has meant a busy time for my business, well busier than usual anyway. I decided to attend some local Christmas markets to help generate some income because my financial situation is dire at the moment. I really want to be able to start contributing towards the life me and my partner have and it’s so frustrating when it’s not possible. As I am sure some of you are in the same situation, not able to work because of RA or working very little so you rely on your partner financially, you probably understand my predicament. I have always been an independent person, determined to pay my own way in life but the simple fact is, without my partner I would be living with my parents again and unable to live independently. I thank him so much for this but words just don’t seem quite enough.

Anyway, my search for a little part time job alongside my business, so I can still do what I love but have the security of regular income too, has been unsuccessful so far. Once again it seems I have been given no chance to prove myself to employers and not even been offered interviews for any roles. It strikes me as odd that if someone in my position with plenty of work experience including running my own company can’t get work then where does that leave those of us who have RA that have never been given the chance to gain any experience. Are you struggling to find work too? It interests me how people juggle work and their condition, when do you decide that the time is right to start work again or for the first time with RA? How do you cope financially if you don’t work? It’s a daily battle for all of us anyway without thinking of these things. The only thing holding me back is consistency as I have mentioned before. The fear of flare ups and having to have time off worries me as I hate to let people down and explaining why I can’t do things because of my RA. Let’s face it; if you don't have it then you probably won’t understand how a swollen wrist, knee or fatigue will prevent you from going about your day normally.

Anyway, what I am trying to say is all I really want this Christmas is an opportunity. To be given a chance to supplement my teeny income with some stability and regular work. It would be great to interact with people in a working environment again too as I miss that terribly as I work alone at present. To have a plan for each week would bring a renewed sense of purpose to my life again and further my rehab back into normal life.

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)